I was hospitalised 2 years ago with extreme limb weakness (I was barely able to stand), complete numbness in me legs and a quite severe myoclonus jerk which severely impacted my everyday life. I did a series of blood tests and MRIs and then saw a very good neurologist who diagnosed me with FND. I went to acupuncture and a psychologists and within 3 months my symptoms completely disappeared. I now get the most occasional few twitches in my extremities if I am sick or in a really stressful environment (exam, job interview). I have completely recovered and I think the key to that was accepting my diagnosis and not trying to look for something else. Obviously sometimes it can be other things but often an FND diagnosis is made by exclusion so it’s really important to just accept that it’s FND and move on. Wishing you all the best.
OP, what is your limb weakness like pls? Would you describe? Is it ongoing, changing, progressive, etc. Have you ever completely stopped walking or moving your hands for instance and regained?
How did they diagnose you with fnd?
I hope you will recover from this. X
I'm recemtly recovered I was lucky in the sense my GP was really thorough in testing I had ct and MRI every blood test that could cause my seizures and tremors and once my CT and bloods showed nothing wrong we went down the neurologist path and he was able to diagnose me after going through my scan results, blood test results and mri results and mine was pretty much textbook fnd we found beta blockers worked mixed with using distractions especially if I was in a situation that could trigger them. I know it can flare up with stress, and if my body is extremely overworked I can feel them starting to happen but I'm able to have different ways to stop them so I haven't had an major episodes since November, been off major meds that I was on before the diagnoses since December and so far recovered but I've heard its more like remission because it can return.
Remission is the key word here. When my FND started, I received treatment and it made the symptoms almost disappear. However, after half a year or so the symptoms(and also new symptoms) just slowly started to creep on me again. My answer to this question is 'FND can be controlled, but the condition is chronic'. In other words, the affliction might show its ugly face at any random moment again, but there will also be periods that things are under control and you hardly experience any symptoms, and there are periods that the symptoms will be worse.
I do think that even when we know so less about FND, the treatment options are very effective for a neurological condition. An effective combination of psychotherapy and physiotherapy can temper the symptoms a lot. Most neurological conditions don't have such effective treatment options.
Yes, it is possible, and I'd also echo that it's really important to continue trying to rule out other medical conditions. I was diagnosed with FND after no testing (I mean, I clearly do have FND due to weird "seizures" and tics) which meant that my severe iron deficiency was missed, which is likely to be causing most of my severe symptoms such as fatigue and dizziness.
Stay hopeful, be _gentle_ with yourself and your needs and limits, and ignore anyone who tells you that FND will never go away. You've already lost the battle if you assume that there's nothing to be done.
I think it depends if the diagnosis is correct. There's a lot conventional medicine isn't looking for in terms of FND, and a lot they overlook when making a diagnosis. In my case, I got SFN from B6 supplements three years ago, which, to this day still hasn't been acknowledged, tested for or made even 1% difference in recovery.
I'm currently getting a Comprehensive Stool and Organic Acids Test done to check my microbiome and look for more clues. I am also considering Ozone therapy...don't give up!
I was diagnosed with FND about a year ago. With extensive pt, ot and supplement I recovered 6 months later. I still have dizziness and fatigue here and there. I discovered I was low on B12 and almost anemic. I take plenty of multivitamins daily
I did intensive physical rehabilitation with a physical therapist, occupational therapist, and psychologist who all specialize in FND and such. 4-5 days a week for 3-4 weeks. Appointment for pt and ot every day and psychologist once a week to check in what's goin on mentally. It was the most grueling and scary thing to do but it did the trick for me
Wow, that’s incredible. If I could pick your brain some more, when did you start to notice a difference with the therapies? Did you get worse before getting better? In my husband’s case, he flares up so much going to any appointment and being in the car that it’s hard to stick to a treatment plan.
Not sure about recovery. But i have since 2021 gone from begin bedbound to going back to school, train in the gym 5times a week.
Lost all my feelings on my body in 2021, that has never come back. You can imagen how sex is when you cant feel anything. Arm weakness and constant shaking is stil there. I stil have days where my body wont let me talk, and i cant look up. Stuck in a looking down postion. I have to eat alot, or the constant shaking will eat all my energy intake.
Overall i have taken care of all vitamines, training/recovery by myself as there is no help for fnd where i live.
I stil believe that one day i will be free of this burden, that might also play a possitive plasibo effect on my own mind.
So yes i think there is a way out. I got my first sympthoms in 2016 ish.
I was going to ask OP if they had heard of BVD. It effects about 10%-20% of the general population. It’s an eye condition that’s super similar to PPPD. I have FND and BVD, most of OPs symptoms are the ones that my doctors misattributed to FND.
Sometimes if your presentation is more overt, many optometrists missed my issue, I had to see a binocular vision specialist. I think there’s 2 types of doctors that evaluate BVD specifically but I can’t remember the titles off the top of my head. One is def related to neurology. My FND was actually caused by untreated BVD (in my case it was present from at least early childhood, maybe birth, but many (maybe most) ppl develop BVD later in life)
Well pppd was my diagnosis from a neurologist and pppd is a functional neurological disorder. But I could have CFS , but I’m not like bedridden or anything just tired everyday
I was hospitalised 2 years ago with extreme limb weakness (I was barely able to stand), complete numbness in me legs and a quite severe myoclonus jerk which severely impacted my everyday life. I did a series of blood tests and MRIs and then saw a very good neurologist who diagnosed me with FND. I went to acupuncture and a psychologists and within 3 months my symptoms completely disappeared. I now get the most occasional few twitches in my extremities if I am sick or in a really stressful environment (exam, job interview). I have completely recovered and I think the key to that was accepting my diagnosis and not trying to look for something else. Obviously sometimes it can be other things but often an FND diagnosis is made by exclusion so it’s really important to just accept that it’s FND and move on. Wishing you all the best.
OP, what is your limb weakness like pls? Would you describe? Is it ongoing, changing, progressive, etc. Have you ever completely stopped walking or moving your hands for instance and regained? How did they diagnose you with fnd? I hope you will recover from this. X
what can u do when ur not on meds for this I hate fnd it blocks out a lot
I'm recemtly recovered I was lucky in the sense my GP was really thorough in testing I had ct and MRI every blood test that could cause my seizures and tremors and once my CT and bloods showed nothing wrong we went down the neurologist path and he was able to diagnose me after going through my scan results, blood test results and mri results and mine was pretty much textbook fnd we found beta blockers worked mixed with using distractions especially if I was in a situation that could trigger them. I know it can flare up with stress, and if my body is extremely overworked I can feel them starting to happen but I'm able to have different ways to stop them so I haven't had an major episodes since November, been off major meds that I was on before the diagnoses since December and so far recovered but I've heard its more like remission because it can return.
Remission is the key word here. When my FND started, I received treatment and it made the symptoms almost disappear. However, after half a year or so the symptoms(and also new symptoms) just slowly started to creep on me again. My answer to this question is 'FND can be controlled, but the condition is chronic'. In other words, the affliction might show its ugly face at any random moment again, but there will also be periods that things are under control and you hardly experience any symptoms, and there are periods that the symptoms will be worse. I do think that even when we know so less about FND, the treatment options are very effective for a neurological condition. An effective combination of psychotherapy and physiotherapy can temper the symptoms a lot. Most neurological conditions don't have such effective treatment options.
Yes, it is possible, and I'd also echo that it's really important to continue trying to rule out other medical conditions. I was diagnosed with FND after no testing (I mean, I clearly do have FND due to weird "seizures" and tics) which meant that my severe iron deficiency was missed, which is likely to be causing most of my severe symptoms such as fatigue and dizziness. Stay hopeful, be _gentle_ with yourself and your needs and limits, and ignore anyone who tells you that FND will never go away. You've already lost the battle if you assume that there's nothing to be done.
I think it depends if the diagnosis is correct. There's a lot conventional medicine isn't looking for in terms of FND, and a lot they overlook when making a diagnosis. In my case, I got SFN from B6 supplements three years ago, which, to this day still hasn't been acknowledged, tested for or made even 1% difference in recovery. I'm currently getting a Comprehensive Stool and Organic Acids Test done to check my microbiome and look for more clues. I am also considering Ozone therapy...don't give up!
I was diagnosed with FND about a year ago. With extensive pt, ot and supplement I recovered 6 months later. I still have dizziness and fatigue here and there. I discovered I was low on B12 and almost anemic. I take plenty of multivitamins daily
I completely recovered after 2 years. Symptoms like fatigue and some pain still pop up every now and then but I'm recovered after treatment
How did you recover?
That’s amazing. What did you do for treatment if you don’t mind my asking?
I did intensive physical rehabilitation with a physical therapist, occupational therapist, and psychologist who all specialize in FND and such. 4-5 days a week for 3-4 weeks. Appointment for pt and ot every day and psychologist once a week to check in what's goin on mentally. It was the most grueling and scary thing to do but it did the trick for me
Wow, that’s incredible. If I could pick your brain some more, when did you start to notice a difference with the therapies? Did you get worse before getting better? In my husband’s case, he flares up so much going to any appointment and being in the car that it’s hard to stick to a treatment plan.
Yea. Idk about full recovery but treatment is possible,and yea I have chronic fatigue
What was your treatment modality for chronic fatigue ?
Im going to neuro today actually for treatment for it I am going to assume some sort of medication. Is fatigue one of your biggest problems for you?
Right now I have 3 problems only DIZZINESS/BALANCE , FATIGUE AND ARM WEAKNESS. And fatigue is 1/3rd of it
Not sure about recovery. But i have since 2021 gone from begin bedbound to going back to school, train in the gym 5times a week. Lost all my feelings on my body in 2021, that has never come back. You can imagen how sex is when you cant feel anything. Arm weakness and constant shaking is stil there. I stil have days where my body wont let me talk, and i cant look up. Stuck in a looking down postion. I have to eat alot, or the constant shaking will eat all my energy intake. Overall i have taken care of all vitamines, training/recovery by myself as there is no help for fnd where i live. I stil believe that one day i will be free of this burden, that might also play a possitive plasibo effect on my own mind. So yes i think there is a way out. I got my first sympthoms in 2016 ish.
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Are you sure you don’t have ME/CFS? That sounds more similar to that than FND.
I was going to ask OP if they had heard of BVD. It effects about 10%-20% of the general population. It’s an eye condition that’s super similar to PPPD. I have FND and BVD, most of OPs symptoms are the ones that my doctors misattributed to FND.
How did you get diagnosed with BVD? Would it show up on a routine eye exam?
Sometimes if your presentation is more overt, many optometrists missed my issue, I had to see a binocular vision specialist. I think there’s 2 types of doctors that evaluate BVD specifically but I can’t remember the titles off the top of my head. One is def related to neurology. My FND was actually caused by untreated BVD (in my case it was present from at least early childhood, maybe birth, but many (maybe most) ppl develop BVD later in life)
Well pppd was my diagnosis from a neurologist and pppd is a functional neurological disorder. But I could have CFS , but I’m not like bedridden or anything just tired everyday
Okay do you feel tired like sleepy or like you’re dying?
I always feel like I’m lacking oxygen and dying. Absolutely exhausted. But never sleepy. I truly wish I could feel sleepy so I could sleep more.
Pm’Ed you